KEEP BELIEVING

Sorry for the lack of creativity in the post title.

We had the results of the MRI from yesterday read to us today. The news was pretty much devastating. The tumor in Brian's head has ALSO become a leptomeningeal tumor and I looked for a good google link for you, but couldn't find one. The leptomeninges work to move the spinal fluid all over the brain and spinal cord. There was particular concern involving the brain stem. Whatever. Go research if you want to. I tired of it after 10 minutes. The primary site of the tumor is also growing. So, educating myself further at this point in time is the last thing I want to do.

What it means is this:

The tumor is growing and spreading and the latest chemo isn't working either. It is time to be done.

Brian didn't "get it" as we were leaving the doctor's office. He was trying to schedule his next appointment and treatment.

I had to explain to him in the car and again at home that the tumor is growing and there is nothing left to do.

He said, he can't do that. He can't do nothing.

I said, Brian, there are no chemos left to try for the stage that your cancer is in. There is no treatment left that is going to take away the cancer that is now spreading into new areas of your brain and possibly your spine.

He said his symptoms weren't that bad to just do nothing. There has to be something else.

I then explained that his symptoms HAVE gotten worse in the last few weeks. I told him he isn't remembering things. He is falling. He is unsteady on his feet. His right hand and arm hang basically limp. His symptoms are worse and when combined with these results, it is time to say enough is enough.


I said I don't know what else there is to do unless you want to try somewhere else in the country with another specialist, but that would require travel which you are not up for and we would most likely get the same response. Brian, the cancer is growing in your brain. Why would you keep trying chemotherapy when it isn't working? Why keep putting it into your body when it grows anyway?

He is mad. Well, A little pissed, he says.

I will tell the boys this weekend, but they know. Anyone who has seen Brian over the last two weeks knows or knew.... except Brian.

I have made the first step for Hospice contact. They are supposed to contact me within a day or two.

I am going to turn over scheduling of meals and cleaning, rides for the kids, playdates, etc. to some friends and/or family. Just give me the weekend to think it through.

The good news is that Brian has not vomited since Wednesday afternoon. We tried a different drug, but it could also be the chemo leaving his system.

So, that is it. We are done. Brian is dying. Maybe weeks. Maybe more. Maybe less. We don't know.

Pray for our peace.

Pray for our acceptance.

Pray that Brian and I can change our conversations more and more about coming to Jesus than fighting to live.

Pray for our boys.

I will keep you posted on how Brian is doing as much as possible. I plan on spending just about every waking moment with him making it beautiful.

If anyone wants to visit us, let me know. Ed and Jan have lots of room. We have lots of room. We don't know how fast Brian will decline.

KEEP BELIEVING with a focus shift to the afterlife.

Okay, so we have made some progress the latter half of the week.

Brian and I met for about 2-1/2 hours yesterday with his employer understand this voluntary package and what it means for us. They had just received word that those on short term leave were eligible which is why they called us and wanted us to know about the package. They had an obligation to ensure we were aware, but the deadlines were already in place. Thanks to their time and efforts, I feel very informed to make an informed and detailed decision. It is a great package for anyone close to retiring or anyone that was considering changing employers or has something else in the works or was considering leaving the company anyway. It makes incredible sense for us if we think Brian would not survive the year. About this time next year, it breaks even for us and becomes a bad decision after about one year. So, basically taking the package means betting against Brian's survival in so many words. We have decided to put our names in as eligible knowing we have some time to take our names out. If we didn't put our names in as eligible by Monday, it would not be an option at all. This gives us some time to monitor Brian's progress and make some decisions based on that. If we get some devastating test results, knowing we are down to our last treatment option, that would lead us toward taking the package. If not, I personally, would not bet against Brian at any point in time. While we have never talked to his doctor about exactly how long he expected Brian to survive, I would venture to guess he is surprised to see Brian still kicking it as he is. Who are any of us to assume how long he will continue to do exactly that?

Regardless, we have a few more weeks to think about it. If Brian deteriorates in that time, this could be the answer to some more financial security for me and the boys. If he does not, then it could be the answer to his healing. Regardless, it is a prayer answered in some way.

That being said, we have also made progress with the chemotherapy. Not to bore you with the details, but some angels that I don't want to mention because they are doing us a large favor are making it happen and we are extremely grateful. Brian will undergo chemo this Monday - Avastin and Carboplatin. We are paying for some of it out of pocket, but our portion is very affordable so far. The insurance won't budge. At this point in time, it doesn't matter, though. That prayer has been answered.

Brian is doing okay. We have had to have some very difficult discussions regarding his condition, his outcome and our feelings about the future. It is difficult and emotional, but we both know that we have to think both ways and be as objective as we can about what will happen if he survives or if he doesn't.

Brian's right side seems to be getting just a tad weaker. He is starting to fall or nearly fall more and more. Walking is becoming more challenging at times. He is way too proud to use any sort of assistive device, though. I respect whatever he wants as long as he is safe. I am so thankful for the disabled parking placard. It has really helped a lot these last few months. He pushes through all of this, though, with a good attitude.

We switched his anti-seizure medication from generic to name brand again. Brian has had no vomiting and little feelings of dizziness since Sunday. We made the switch on Tuesday. So, this is very encouraging. This is a prayer answered.

I have been so much more at peace the last couple days. That is a prayer answered.

Thank you to those joining us in prayer.

KEEP BELIEVING

We had our appointment with the surgeon yesterday. He was pleased with how Brian looked and was speaking. We explained about Brian's vomiting episodes. He had two theories. One being that Brian could have something viral going on that manifested in his inner ear as can happen with sinus viruses causing some sort of vertigo issue. If this is the case, it should clear up on its own. His second theory was that the Keppra (anti seizure drug) Brian takes which recently switched from manufacturer to generic may be causing this. So we are going to start taking the non-generic formula again for the additional cost.

The CT scan Monday looked fine - the ventricles are not enlarged or smaller showing the shunt is working fine. In addition, the tumor has not grown. However, it is showing increased enhancement meaning the areas in question are still considerably in question and probably "hot."

We told him we were leaning to chemo instead of surgery at this point in time. He has no issue either way with our decision.

We are still having issues with the insurance approving the chemo for Brian's condition. Latest we heard was that it could be A MONTH before they have a decision. So, today I have to make that unpleasant phone call myself to implore on the insurance company's good nature to rush this as my husband has not had any treatment for his illness in 3 months and this is our last option. Tentatively, though, we have scheduled for Monday, January 12.

Today we received a phone call from Brian's employer who is offering the company voluntary separation packages. The package makes incredible sense for us if we think Brian is not going to survive for the next 6 months. If he survives the next 6 months, it becomes riskier. After 18 months, it becomes disastrous unless I am back to work at am employer with good medical benefits at that point in time. I did our budget yesterday assuming Brian would be on his short term disability until October and start long term reduced salary in November. With this, it is most likely that I will need to go back to work sometime this fall anyway to make ends meet. This is stressful given the current job market. The major employer in this town is trying to get its employee's to separate in order to avoid layoffs. There is little available right now. I have an engineering degree, but have always worked in accounting/finance. Accounting/finance has changed drastically in the last few years since I quit with the implementation of Sarbanes Oxley rules and more and more companies wanting CPA's. I am not going back to school to become a CPA. Also, I don't want to be at a new job if Brian is getting sicker. I want to be with him taking care of him and taking care of my boys. I want to give my boys stability and love and assurance - not day-care and mommy gone a lot, etc.

I am stressed. I knew this would be the year of making big decisions, but I didn't expect them all to come upon us so fast. I am a mess. Also, I wasn't going to say this because I don't want to do this with any attention on myself, but I am trying a 3 week fast. I am not doing a full fledged fast, but fasting from a few things in my life that I know I can go without. I am replacing them with prayers for Brian's healing and for our financial provision. So, when opportunities like this voluntary package come along, I don't know if it is God's way of saying "here is my provision for the next year" or if it Satan attacking our faith for Brian's recovery. Also, we have to make our decision on this by MONDAY.

Here is what I am stressed about:
Insurance issues with chemo next week (waiting another month is just not an option in my mind)
Making the phone calls for the insurance issues.
Decisions about chemo/surgery.
Making a decision about the separation package.
Going back to work/making ends meet.
Sticking to the fast for renewal spiritually.
Finding a new pediatrician for the boys.

Please pray for us.

KEEP BELIEVING

I feel like I have been here before - TIME AND TIME AGAIN. Brian had his oncologist appointment today and was supposed to start chemo. Well, it appears this chemotherapy regimen of Carboplatin and Avastin has not yet been approved by our insurance for Brian's diagnosis, so we have to get special approval. Approval for which we are still waiting. According to the oncologist office, they have checked a couple times with the insurance and are awaiting approval and were told today 5-10 days. Are you stinking kidding me??? This was scheduled Dec. 10 and this was the first we heard of an insurance issue. We could have been working this all last months. Now, we have to wait for Brian to get sicker while what? the insurance files a few papers and finally approves this because this is all we got left???? Can you tell I am fuming?

But more than the insurance approval issue is the lack of communication again. There was absolutely no reason for us to go into the office to find this out today - this is a phone call that should have been made to us before we left the house - "Hello? Mr. And Mrs. O'Neill? It appears your insurance still has not approved the chemotherapy Brian has scheduled for today. There is no reason for you to come in unless you are having another issue you would like to talk to the doctor about. Maybe you could call the insurance company yourselves to assist in our plight for approval. And let's go ahead and get you on the schedule for next week to make up for this. K?" Only that would be in LA LA LAND...

AND? We paid for the stinking office visit...

As it turns out, due to Brian's vomiting issues, he is currently undergoing a CT scan to see if perhaps the shunt he has is clogged or backed up causing him pressure issues.

Also? We have an appointment with the surgeon again tomorrow to discuss the surgery he mentioned. So, maybe this cancellation of chemotherapy today is God's way of telling us to think harder about the surgery.

It is very confusing and frustrating and I feel like we are right where we were mid-November. Not moving forward. Just waiting. And deciding. And struggling.

KEEP BELIEVING

I'm not going to post for a few days. Read a bit each day to tide you over. There is a lot of crap meaningful stuff here today.

We met with Dr. K, the surgeon, again today.

He stated how pleased he was at Brian’s condition and current status given where we were a little over a month ago prior to the shunt placement. He truly didn’t expect the shunt to provide Brian with as much relief as it did.

Next he stated that Brian’s MRI is definitely showing growth and it looks likely to be malignant tumor with increasing enhancement on the scan accompanying the growth. This is definitely concerning and does not bode well for Brian’s prognosis.

He stated that the prior surgery left an area of access, if you will, for entry into the tumor bed. A sort of a void then the tumor starts then there is healthy brain surrounding it. He stated he could get to some of the tumor relatively easily, but as he neared the edges, he would get to very sensitive and key areas such as Brian’s speech and motor functions, mainly his arm/hand. If he were to do a surgical resection, he would debulk the area he thought he could get with reasonable safety leaving a margin of tumor behind.

But not without risk. There is risk to Brian’s speech and motor functions even if he leaves a significant margin. About a 15% or so risk, if he were to give a number, to further damaging Brian’s abilities. The reason for this is that the brain has redundancy of functions. With each resection (removal of some brain) the redundancy is being eliminated. As is pretty apparent with Brian’s current condition, the redundancy of certain functions with Brian is eliminated at this point in time given his 3 prior resections.

So, the decision is this: Surgery or not to Surgery.

And it is the biggest decision we have had to make yet.

The case against surgery is that this does not treat the actual cancer. It just removes some of something that is very aggressive and growing despite our best efforts. The remaining cells will likely act as they are now - growing and progressing.

However, debulking the tumor would give us more time to be together until the tumor grows to a point where it compromises Brian’s life again.

However, debulking could cause Brian to have further problems than he has – his motor functions and his speech. Making it so that even if it did buy us more time, that time would lack in the quality we have now being able to communicate and have Brian mobile.

As we left it today, we are meeting with Brian’s oncologist tomorrow to discuss chemotherapy options. Any chemotherapy that we do would delay surgery due to the effects of chemo on the blood counts, etc. making surgery and its side effects more risky with bleeding and infection.

Dr. K did state that if we thought surgery was something we were considering at some point in time, then sooner than letter would be better for Brian. The tumor is large as it is. The larger it gets, the more risk involved. He stated that for many people the risk of surgery for a few additional months would not be worth it, but with a 5 and 7-year-old boy, a few months is a large portion of their lifetime.

We would not do any surgery until after the holidays regardless. Dr. K, being a father of 6, stated that we should enjoy our holidays and think about this for a while. We are meeting with him the first week of January.

From my standpoint, the thought of surgery petrifies me. While the idea of more time is terrific, I don’t think I have fully absorbed the idea of little time as it stands. Brian seems to be doing so well with the exception of his right hand becoming almost non-functional in the last week. His speech is not too bad and he is very alert and in a great mood.

Also, to me more time isn’t worth it if it is a poor quality of time. I just want what we have remaining to be wonderful.

And the thought of spending more hours in the hospital dealing with the university system makes me want to put my fingers in my ears and hum “Mary Had a Little Lamb” over and over again. It is selfish on my part, but the surgeries and time in the hospital are VERY hard on us as a family. I don’t know what the recovery would be, but I hate having to choose whether to spend the night in an ICU waiting room chair where I can be close to my husband who may need me, etc, or home with my boys who also need me. I hate that my boys don’t have Daddy at home and are tossed between friends and family members while their parents have to make difficult choices. Grant has been acting up as it is and I am afraid of what may be in store in the aftermath of another surgery. This is WAY harder on my kids than anyone who doesn’t spend every day with them could possibly understand. I know kids are resilient, but they are also fragile. My kids need stability and I feel like every time I turn around, we are about to turn their lives upside down AGAIN. It makes my head spin.

Also from my standpoint, I want to look past my own issues and hardships and do whatever it takes to be with Brian for as long as possible. We all know that if I ever felt like Brian made a choice not to have a surgery that could have given us more time because I was exhausted from handling the home front and discipline and stability, I wouldn’t be able to live with myself the same way.

Lastly, from my standpoint, I am tired of having to help make this choice. And I am grateful for having this choice. Does that make sense?

From Brian’s standpoint, he feels good and stronger right now and wants to do SOMETHING to be aggressive towards the tumor. He just doesn’t know what that SOMETHING is.

On another note, we were interviewed last week for a message at our church this weekend. The message is about Finding Peace. We will be there at 9:00 am (we live across the street), but there are services at 6:00 on Saturday and 9:00 and 11:00 on Sunday. They will show a video clip during the message sometime from our interview. I can’t wait to watch it because I need to remember what I said about how we find peace in the midst of our struggles.

KEEP BELIEVING

Brian had his first post operative MRI on Monday. Those results were read to us today.

First, though, I will report on Brian's overall health in the last month. On Nov. 4, his last MRI date, he could not lay down without having a series of seizure-like activities - dizziness and confusion - due to the increased spinal fluid in his ventricles. He also could not walk across a room without assistance. In addition, he was suffering from excruciating headaches. Since surgery, Brian has continued to improve in strength and neurological function. His walking became brisker and more stable than it was pre-surgery and improved gradually throughout the last month. In addition, his speech greatly improved. He tapered off the steroids so his appetite is back within healthy boundaries and his grumpiness has dissipated. He is not suffering from headaches much at all.

However, in the last week, Brian's body in general has been incredibly fatigued. He has low energy and his muscles and neck ache. His right hand since Monday has lost some function as his fingers barely move.

In talking with the doctor today, it appears the tumor has grown again. From 2.7 cm to 3.4 cm in one direction and from 3.2 cm to 3.5 cm in another direction - about a 15-20% growth. This is since the Nov. 4, MRI. The tumor is now pushing some of the healthy areas of the brain and that is most likely causing his right hand symptoms.

The overall fatigue and muscles ache symptoms are probably from one or a combination of things. From the surgery, it was discovered that Brian had low sodium in his system. His body is flushing sodium at a rate greater than it should. To alleviate this problem, he is supposed to increase sodium intake and reduce his water consumption. Both are difficult for Brian to accomplish. We have substituted Gatorade from water all together now. Low sodium can cause some muscle issues and neurological problems. In addition, around the surgery time, Brian was taking large doses of steroids. It could be that we tapered off the steroids too fast causing his body to be cortisol deficient. The steroids have to be tapered slowly in order for the glands to start producing cortisol on their own again since the steroids supplement the body with it and the glands stop producing it when one is on high doses of steroids. So, it is also suggested that Brian go back on a low dose of steroids and taper even more gradually over the next month.

As far as next steps for the tumor progression, here is where we stand. Dr. G (oncologist) is going to speak with Dr. K (surgeon) about his thoughts regarding surgery, etc. As you probably remember, Brian is pretty against any further surgical resection, so unless they think there has been some amazing change or something minor can be performed, surgery is pretty much out. That is a discussion between the two docs first, though. We are meeting with the surgeon on Dec. 9, 2008. The tumor board will discuss Brians case on Monday, Dec. 8 to determine from a radiological, surgical, radiation and oncological standpoint what they think should be prescribed. In all likelihood, the consensus will be further chemo if Brian is willing.

Brian is willing. He tells me he still has some more fight in him. He feels strong enough to handle further treatment. This is not the news we wanted to hear, but have come to be somewhat prepared for.

The next chemo will likely be VP-16 with Avastin or Carboplatin with Avastin. The VP-16 is a pill taken for 21 days at home. The Avastin is given IV every other week. The Carboplatin is given once a month IV. Both are tolerated pretty well, with the VP-16 being a bit harsher with respect to nausea. The Carboplatin mostly affects the blood counts, particularly platelets.

So, that is where we stand today. We will have a decision within the week for our treatment plan.

Our biggest prayer right now is for health for Brian and clarity in our decisions.

My biggest prayer, selfishly, is for a blessed Holiday month. I don't want anything to mar this time for my boys and for our family. There is a possibility this may be our last Christmas together and I just want it to be as perfect as it can be with lasting, good memories for our family. I pray Brian does not deteriorate and is not sick during these next several weeks in order to make travel easier, as well.

KEEP BELIEVING

There are more examples in my life than I can take the time to outline of times when our desert places were turned into the land of plentiful through faith, trust and prayer. God orchestrates our lives in ways unimaginable to us when we are willing to let it go and hand over the reins to Him humbly. The last two weeks, we have spent much time reflecting on God's plan for us, talking about peace, faith, our love, salvation, death, our past and the kids' future. We have shared tears and heartache and desperation and devastation as we struggled to let go and rest that Brian's life is in God's hands.

Today, after many hours of conversations and intentions made known to everyone that we would like to move forward with this surgery that would so obviously help Brian, Brian was taken to surgery around 3:30 pm. The surgery itself lasted around 30 minutes. Total pre-op, post-op, surgery and recovery time was around 2 hours. Brian was under general anesthetic. The procedure involved putting a permanent tube into Brian's right ventricle.

this is Brian's MRI two times ago - mid October labeled to show you what a ventricle is

Otherwise he is doing well and is recovering fine. He is still speaking better than last week, is alert and feels good.

The quality of life given back to us is immeasurable. What we have just done has not at all affected or addressed the cancer, but has alleviated Brian's fast developing symptoms causing a rapidly deteriorating condition.

And I believe God orchestrated this entire event:

Brian and I were inches away from canceling the consultation with the surgeon last week since we were not seriously considering a surgical resection at this point in time. Had we done that, we would not have personally met Dr. K and I do not know that he would have so rapidly read Brian's scan and personally called us with his finding and recommendation. We were not supposed to get the results of that scan until this morning. I shudder to think of the condition Brian would have been in today given the rate of the spinal fluid building up in his ventricle. Instead, Brian's complications were eliminated by Wednesday night via a temporary drain and now with a more permanent shunt.

I had the ball rolling for hospice assistance on Wednesday morning, but now we are considering further treatment.

Wednesday morning, Brian could barely tolerate light, wind, noise and movement. Today he wants to get out of bed, get home and play with his boys.

Last Friday, I had told my mom that she didn't need to stay past the weekend. We didn't need that help yet. Sunday, Monday and Tuesday she stepped up helping my kids while I attended to Brian's needs which were quickly and unexpectedly growing. Wednesday, Thursday and Friday she was here to get my kids to and from school, homework finished and baths and meals administered, including tending to my very sick Gavin. Today, she took the boys to her house for the weekend. It gives her time with Dad and back in her environment. It allows me the freedom to be with Brian instead of choosing between the boys and Brian. It gives the boys a welcome change of pace and some fun. Also, it gets sick Gavin out of our house and allows the house a couple days to lose the germs before Brian comes back home.

I know I made my voice very well heard at the hospital on Brian's behalf. Before each conversation as Brian's advocate, I felt the peace of Christ guiding me to use a respectful approach, logical wording and calm demeanor. My words were His words and because of making our desires known, I find it no coincidence that Brian skipped lunch despite the urgings of both a Physician Assistant and a Resident to go ahead and eat since he was not scheduled until Saturday only to discover that there was a cancellation and Brian's procedure took its place this afternoon. Had I not made our heart's desires and our frustrations known in such a manner, I do not believe Brian would have been placed on today's schedule. Had Brian eaten, he could not have had anesthesia.

Also, Dr. K. is a Christian man. Just prior to surgery, he came into the room and said he prays before each surgery and asks the patients to join him in prayer if they do not mind. He prayed for Brian's recovery and his performance and in thankfulness for the gift of salvation through Christ. It was a moving moment and one that we have never experienced before.

It was as if God himself laid his hands right on Brian and said, "I'm not done with you yet. I have more plans for you and I will be glorified even more through you." And I have come to understand that even through death, God can be glorified.

While this surgery has not done anything for Brian's prognosis from the tumor, it has restored within Brian a new hope and a spark to live his life, however long it may be, even more humbly and in greater service to the Lord with continued dignity and character. It has allowed him to come back home as the Brian we all know and love continuing his exemplary life and legacy.

Romans 8:28 “And we know that all things work together for good to those who love God.”

KEEP BELIEVING

So, the hospital FINALLY has an answer that surgery will be, AT BEST, Friday night and most likely Saturday morning. So, I, naturally, find this unacceptable and let the nurse know this:

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant of the surgeon, talked with the Nurse Practitioner for the Surgeon, talked with the staff nurse caring for Brian on every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant, talked with the Nurse Practitioner for the Surgeon, talked with the staff nursed caring for Brian times every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant, talked with the Nurse Practitioner for the Surgeon, talked with the staff nursed caring for Brian times every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

As I write this, Brian is having a hole drilled into the top of his skull and a drain installed to relieve the fluid built up in his brain.

I may not have time to write all the details because this procedure is only supposed to take about 45 minutes, but I will get in what I can.

As you know from my previous post, the surgeon called today. We were awaiting a phone call to determine the schedule. At 1:15, we got a phone call from a nurse saying they have been holding a bed for Brian and was he on his way. I explained that we were waiting for a call from the doctors office, but we could be there right away. We were there within 40 minutes - around 2:00. At 3:00 Brian, was finally taken to a room. Hurry up and wait.

After he was made comfortable in his room, Dr. K's nurse practitioner assessed Brian, read his scan further and came back explaining the options for draining. She was to speak with Dr. K. and then have a recommendation. Dr. K and the nurse practitioner told us around 4:45 their findings. As it turns out, I misunderstood from our conversation the type of swelling Brian had. He has swelling in the ventricles. The ventricles are the two large fluid filled cavities in the middle of the brain. His are enlarged. Typically, those with enlarged ventricles have a drainage problem for whatever reason and can have complications. However, the complications are not typically acute focal symptoms as Brian is experiencing - the right side weakness, the speech issues, etc. Still, they recommended a procedure which would drill a hole in Brian's skull insert a tube and drain the spinal fluid off the ventricles to normal pressures. They will then monitor his neurological progress - speech, right side, stability, balance, etc. - to see if this improves. Typically, they monitor for about 24 hours.

IF this relieves Brian's symptoms and causes an improvement, Brian will likely have a more permanent drain installed. One that drains from his ventricles to his stomach. Weird stuff. Sci Fi Channel.

Oh yeah, I forgot to to tell you, the procedure Brian is currently undergoing, is happening right in his room at his bedside.

What I also haven't told you yet is that this day has been one miscommunication after another and WE have suffered from it. I am so frustrated.

First of all, the surgeon's office neglected to call us and get us to the hospital when we they wanted us and were ready for us. Therefore, we were delayed - hurry up and wait. Then, when we arrived, and they decided to do the procedure, they wanted to move him from the overflow neuro ICU to the regular neuro ICU. Hurry up and wait. This all happened right around dinner time 5:30, so Brian was getting hungry. He was told not to eat due to upcoming procedure. Then it became apparent that shift change was going to occur and it was not going to happen before shift change. Hurry up and wait. SO Brian was given a sandwich and baked Lays and water 6:00. THEN, the resident surgeon performing the installation of the drain calls around 7:00 and says it will now be 10:00 at night before he can do the procedure due to food in Brian's stomach. Hurry up and wait.

I was LIVID!

The entire reason we agreed to this is that we were told it was quick and easy and could provide immediate relief. Then we get here and are told it MIGHT provide relief. Then it gets delayed by hours due to food. And BAD food at that. Brian still isn't sure if it was egg salad or chicken salad. And once again we don't know WHEN we are leaving the hospital.

So ANYWAY, this could have all been avoided if ONE person would have made a call the way they were supposed to in the first place. This drain would have probably been installed this afternoon. NOT at 10:00 at night.

ALSO? They have to watch him for 18-24 hours to determine the benefit. THEN, surgery would have to be scheduled for installing the permanent drain and probably wouldn't happen until SATURDAY with release on Sunday or MONDAY. We specifically made it very clear that we are aware of Brian's advanced cancer and do not want to spend these precious moments in the hospital. We want to spend it as a family - together - in our home with love and laughter and friends and family and our children and good movies and an occasional beer.

SO I am mad and frustrated because other people's mistakes have cost us precious time. Time that cannot be replaced. Time that in invaluable at this point in our lives.

You can bet I will make this known to DR. K in the morning. I also let everyone that touches our path know that if this isn't helping Brian, I want to go home TOMORROW with hospice help and big fat apology. I don't care if it is TEN AT NIGHT.

And of course, I won't let my venting and frustrations get in the way of doing what is best for Brian. Don't worry. I am just mad.

Update: Brian immediately felt relief from the drain. He was more alert last night than I have seen him in several days. You could see in his eyes and his facial expressions a difference. They will continue to monitor him today to see how he fares. Don't know when to expect a decision for surgery for a permanent tube or not. Sometime today. I came home last night to get some sleep and to show my presence to the boys. This is a time of turmoil in our home as it is. Gavin came home from school yesterday and his Daddy was gone. We don't know when he is coming home. So, I am doing everything I know to balance my time and presence with Brian and the boys. Thank God my Mom had guidance from the Lord to stay with me this week. I had told her it was unnecessary just on Friday.

Also, If anyone is considering it, please do not send anything up to the hospital. Brian is at OSF - St. Francis in Peoria, but being in ICU, he is not allowed to have much of anything in his room.


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Just when I feel we are approaching the end....

Dr. K, the surgeon, called today. According to the MRI yesterday, Brian's tumor is unchanged. HOWEVER, there is a tremendous amount of fluid built up in the cavity from his prior resection. This fluid, he said, probably isn't draining due to tumor sediment blocking normal ventricle drainage. The fluid, he believes, is causing Brian to be symptomatic, and not NECESSARILY tumor progression right now.

He wants to put Brian in the hospital today or tomorrow (waiting for a scheduling phone call) to temporarily drain the fluid and monitor Brian's progress. Depending on that outcome, he would then do a surgery to help the drainage process (not really sure what it would entail) that he said would last about an hour. Most patients leave the hospital within a day or two.

He really thinks this is the best thing for Brian right now. Relatively easy with little risk, potential immediate relief and easy recovery.

So, we wait for the word on scheduling this...

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(In the what-the-heck-is-that and why-are-you-showing-this-to-me categories: This is Brian's brain. The top picture is from the Spring. The bottom picture is from the Fall. You can see the considerable growth of the odd area of enhancement on the right (which is actually flip-flopped from reality: the tumor is on the left just above Brian's ear.) It is now the size of a golf ball. The various colors of enhancement on the bottom are more typical of tumor progression. The more definitive lines around the enhancement are more typical of treatment change. )

First of all, many of you have expressed concerns as to why I was at the doctor last week. It was just a new appointment to meet a new doc. I am on my 3rd doctor at this practice in 5 years. They keep leaving. I have a spot on my leg that looks sort of like a mole that I wanted to get checked out because it really isn't a mole. Anyway, it looks like a something or other cyst, only give it some Latin name and you got it. It is nothing. It is basically like a scar tissue that has grown inward instead of outward, but I wanted to be sure, so I also went to the dermatologist. So, LITERALLY 110 seconds and 110 dollars later I am sure. That is all. Now I am off to insure my life while it is still insurable for my kids' future.

Secondly, we had the best time evah! at the Cardinals game with Matt and Mindi on Friday night. The worst part of the entire evening was the fact that we had to get up at 8:00 the next day to leave by 9:00 to be at the wedding BACK in Peoria on Saturday. And I will say that Mindi made up for at least half nine months of sobriety during her pregnancy in THAT ONE NIGHT. Holy Cow! That girl has a hollow leg! AND she kept farting. At the ballgame! And it smelled like Mom and Dad's septic system after a large family gathering before they added onto it. Just sayin'.

Brian had an oncologist appointment today. He had his 8 week MRI last week and the results were read to us today.

There is a small area of change in the tumor bed, meaning the area that the tumor we treated with gamma knife is located- the area we watch closely each scan. The area grew from 29 mm (about an inch) to 35 mm, so a growth of 6 mm, from last MRI to this one (in 8 weeks). The area does not have any swelling around it which is good, but it is difficult to say what the change is from. With an MRI of the brain, tumor does not look very different from other abnormalities like dead cells or scar tissue. Typically, with radiation the largest changes of necrosis (dying cells) and scar tissue will show up at around 6 to 18 months. Brian is 17 months POST radiation (late April 2007 in California), so the changes COULD be from radiation induced scarring. USUALLY, tumor progression is accompanied with other swelling which Brian does not have. HOWEVER, the Avastin he takes as part of this chemotherapy protocol also reduces that swelling, so it is difficult to say for sure.

Clinically, Brian is doing well. He tolerates the chemo (Avastin and CPT-11) pretty well, and his blood counts remain normal. He is not deteriorating with respect to his neurological functions, but he does not improve. He has some difficulties speaking. His right side does not work great - his hand and arm being the worst. He cannot feel his right side the same as his left side. All these things are the same as post surgery and rehabilitation. They are stable from where they were several months ago, given that on any day he may do better or worse with any one of these functions.

Because he is doing fine clinically and his change was so small and cannot be identified exactly, his oncologist recommends continuing on this course of Avastin and CPT-11. He is getting treatment as I write this. The brain tumor board will review Brian's scans this evening at their meeting.

So, that is about it. Not exactly the news we wanted to hear, but whatever. I don't really know what to say. It is nothing earth-shattering, but it isn't devastating, either, so there you go.

Can you tell I don't really know how to feel about it?

Brian says he feels good, so whatever. Besides, we don't know what the growth is, exactly.

Anyway, please pray for Brian to continue to heal and to feel good.

Please pray for a miracle, because in the end that is what we need.

KEEP BELIEVING

I never have creative words for Brian's results day, so I thought I would give you my analysis of the day instead:

Sisters-in-law that babysit kids for free on said results day and then tell you to spend the day shopping ROCK!

Doctor's visits for any reason other than pregnancy (not that I would know on that one cuz infertility sucks, but adoption rocks) and well baby visits SUCK!

Fathers-in-law that spend the day with your hubby so you don't have to drive him crazy with your antsy-ness and can shop instead ROCK!

Back to school supply shopping with half the town SUCKS!

Having 5 of 25 checkout lanes open during lunch hour when half the town is checking out SUCKS!

Wal-mart's floor staff generally SUCKS! (though there are a few random rockers in there)

Finding all school supplies except HIGHLIGHTERS at one store both ROCKS and SUCKS!

KFC Boneless wings neither ROCK nor SUCK, exactly.

Chemo SUCKS!

Test results that show continued decrease in the area of enhancement and overall stable results ROCK!!!



Continue on the course which we have been following since April - Avastin and CPT-11 every two weeks as Brian continues to tolerate.

Next test and results will be in late September if all continues as is.

KEEP BELIEVING

First of all, thank you to so many who have been sure to let us know you are thinking and praying for us this past week as results day approached. It is always a difficult week.



Let me start by informing you Brian has not been feeling great. He has suffered from some serious insomnia that seems to only be remedied with sleeping aids - not that there's anything wrong with that- but we would certainly prefer he get natural restful sleep. He has had some new "sensations" on the right side of his body and that is about all the more detail I can give you because I don't understand them and he can't explain them any better. He can't explain them any better because it is simply a strange, crazy type of cancer that slowly inflicts different parts of his body depending on which part of the brain is affected. It is not like he can say, "my arm hurts" or "I can't breathe well because of my lungs." Rather, he gets slight headaches (are they sinus or something worse?) and feelings or lack of feelings in his body parts for short durations at a time (Did he sleep on it wrong, did he over use it, or is it something worse?) It is just very difficult to grasp and explain.



Yesterday, we heard from the Stanford team. The areas that changed last time have continued to change. It COULD be radiation effect, but the team tends to hypothesize it is tumor (still shudder when I hear the word) progression. They recommend a change in systemic approach (English: a new chemo (I had to ask, too, don't feel bad)). Dr Recht, the neuro-oncologist at Stanford Cancer Center recommends Avastin (anti-angiogenesis: works to deplete the blood supply to the target area) in conjunction with a chemo in a different family than the Temodar Brian has been taking, namely CPT-11 (Irinotecan). These chemos are administered via an IV drip in the clinic. It has been 8-1/2 years since Brian received a chemo IV drip.



The Peoria doctor gave us the results today. Pretty sad when you can hear from across the country AND their specialist board/panel has reviewed your results AND gets back to you with a consensus before your local doctor even sees you initially. That just gives you an insight into the type of care Brian receives here - very adequate, but not very timely. Dr. G and the Peoria radiologist are in agreement with Stanford that we COULD be seeing radiation changes, but need to treat it as though it is tumor *shudder* progression and change Brian's treatment plan. Dr. G. has used Avastin and CPT-11 on other glioblastoma patients who stopped responding to Temodar. The Avastin is an anti-angiogenesis (agent attacking growing blood vessels) and the CPT-11 is a more standard chemotherapy. Brain tumor patients using the cocktail have shown favorable MRI results, but the clinical results are yet to be determined (translation: increase in prognosis, change or decrease in symptoms. I had to ask again, too.) due to its more recent use with brain tumor *shudder* patients.

The Avastin and CPT-11 will be administered in the clinic every two weeks. Side effects are pretty typical for chemo patients. Brian will also have blood drawn every two weeks to administer his levels - white cell, red cell, platelet, liver, etc. The CPT-11 takes about 90 minutes to administer. The Avastin takes about an hour. There will also be an anti-emetic administered (no puking allowed drug. That one I knew from the past.) This new adventure commences Monday, April 14, 2008 at 8:30 am.


Our reaction to this news:

Not overly surprised given how Brian has been feeling (both)
Sad (me)
Hopeful (both)
Frustrated (both)
Resilient (Brian)
Scared (me)
Withdrawn (me)
Crabby (me)
Comforting (Brian)


Terrible role-reversal in our reactions, I realize, but this often happens. When one of us reacts a certain way to news, the other picks up the slack. The roles will probably reverse or we will meet in the middle soon. It is early in the process.



I don't have a lot of words of wisdom or insight. This is very serious, but we have to deal with it with whatever resources available. We need to be lifted up in oh so many ways.



I try to say optimistic and encouraging and uplifting on this blog. I do this for good reason. First of all, OCCASIONALLY, Brian actually reads what I spend all this time preparing. Also, I re-read what I write and what YOU write A LOT - for encouragement, insight, laughter, love, validation, hope, etc. This needs to be a source of constant hope for us. Make no mistake, what Brian needs is a miracle. Science will not heal Brian from what he has. However, science alone did not heal Brian in the past. Our Savior healed Brian via various medical and scientific avenues. This time, science has little left to offer. Fortunately for us, our Savior never runs out. We know we cannot will God into healing Brian. Regardless, we hold tight to a higher purpose and meaning for all of this in our lives. We simply have to.


Now I gotta go figure out how to explain that to our boys.


KEEP BELIEVING

Some news on Brian....



Today, the clinical trial physican's assistant from Stanford called Brian regarding his last MRI and MRSI. They concur with the Peoria team's assessment that there is an area of increased enhancement - a small growth. It is not an alarming growth, but given the aggressive nature of the pathology (Grade IV glioblastoma, makes me cringe to write that still), it warrants further assessment and possibly a change in Brian's course of treatment.



They are sending their findings directly to the Peoria team (well, his oncologist anyway since don't really HAVE a team here). She is talking with the neuro-oncologist at Stanford for us to seek his opinion as well.



Brian is scheduled for another MRI in two weeks on March 31, 2008. The appointment for receiving the results is on April 9, 2008. If this MRI shows further progression, a change in Brian's treatment plan (a new chemo) will definitely be recommended.



This is difficult, to say the least. We are in good spirits because the change was minimal. Any change with this diagnosis scares us, though. Brian is feeling pretty good. He is having some issues with a sinus-type headache above his eyes, around his nose and over his ears. His left ear is in more discomfort, which naturally has me worried. In July 2006, he experienced lots of these sinus headaches and discomfort over his ear. Looking back, that was probably the beginning of the recurrence. Naturally, these sinus headaches are a concern to us as a potential sign of something more significant. Overall, though, he is feeling relatively strong and I would say his speech is improving.



Pray for Brian - his healing, his peace of mind, his healing, his headaches, his healing

Pray for me - I am a mess trying not to look like one. I am very talented at this.

Pray for my boys - my biggest fear is that they will not have a daddy to raise them. Please pray that my biggest fear is just that - a silly fear.



If you don't pray just read these words and you have prayed anyway...



Lord, we lift up Brian to You for Your promise of healing. We know You are a God of miracles and we are claiming that miraculous healing for Brian right now. You can restore him to the perfect health You desire for him. We are agreeing with You right now for the spirit of truth and understanding You have given to Angie, not a spirit of fear. Fear has no power over You. None. We are praying that Gavin and Grant will have their daddy present in their lives for many years to develop them, suppport them and encourage them. Your desire is for the family to be a unit that models Your love. We pray that for the O'Neills. In your name. Amen



KEEP BELIEVING

One of my fears lately is that I will not be able to express myself to the standards I have come to expect from myself. Some days I feel like what I write is concise, entertaining, informative, well prepared, etc. Other days, what I write is simply brain babble - mindless drivel coming from my fingertips. I fear I will write in this latter manner on days when I really want to say something - days when I have something important to relay about Brian and his health which is the reason I created this blog last April. I want to be most effective during those moments, but some days there is nothing else to do than simply get to the point, to write conversationally, and to ask for forgiveness with respect to grammar and creativity.

Brian’s results day was today. I hate this day. I try my best to occupy my mind and time, but what I find is that I am generally short with my children, ineffective with my time management and overall sick-feeling all day. Today was no different, except that this appointment was late in the afternoon, so I got to experience my shortcomings all day.

I was extremely nervous when the doctor came in and made idle chit chat for the first 5-10 minutes. He asked several times how Brian was feeling and to me those questions coupled with the lack of divulging information could only mean one thing. Finally, he read the MRI results:

The Spectroscopy (MRSI) results were inconclusive (again). On test day, the MRSI should add about 20 minutes onto the tail end of a standard 1 hour brain MRI. When Brian had the test performed, he laid on the table for 2-1/2 hours. They do not know how to administer this MRSI here very well nor do they know how to read it. At Stanford, they use this test often and effectively. Right now we only have this test performed because our follow-up is still part of the Stanford research study in which Brian participated in May. So, we will wait to see what Stanford says about the MRSI again.

The MRI showed minimal increase in enhancement surrounding the surgical cavity. This could mean slight growth. This could mean scarring. This could mean necrosis (dying cells). The Spectroscopy should show the difference to an extent, but it doesn’t really matter here in Peoria, IL since they don’t use, perform or read these tests much. Dr. G. does not recommend any change in treatment right now. The increase was very minimal. The *cringe at word* tumor board (group of neuro-surgeons, neurologists, radiologists and oncologists that review cases) will meet Monday and review Brian’s case to see if they think it warrants any change in our current protocol.

In summary, all in all, it is relatively good news. Brian’s pathology last April is one of the most aggressive types of *cringe at word again* cancer known. So no growth to speak of is encouraging. We, naturally, would like NO GROWTH AT ALL and shrinkage of what little enhancement is remaining, but we will take what we can get for now. We consider this continued testing of our faith, tolerance and reliance upon our Father. We will continue the fight and press on from here. Pressing on right now means another round of Temodar chemo and continued vigor in our worship, prayer and spiritual journey.

Thank you to all our friends and family and my newfound on-line blogging friendships for your continued support and prayers. We would be nowhere without you all.

I am most happy to report that we can, without feelings of hypocrisy, continue to live and write these words …

KEEP BELIEVING

Today is results day. We wake. Getting out of bed on any other cold, dark December morning is difficult enough. Today, it is torture. Brian gets ready. I get ready. We eat breakfast. We act normal. Brian goes 45 minutes before his appointment time to get blood drawn. “Meet you there.” Blood. On Monday at his MRI, they had to have 3 different people poke him to try to find a vein. That hasn’t happened in years. What does that mean? Is chemo taking over his blood now? Great, another test result we have to analyze and account for when making decisions on what to do next. Jan, Brian's mom, comes over. I leave her a note with the bus pick up time. She will feed the boys and get Gavin on the bus, awaiting my return home with news. What news? It’s all any of us think about.

The whole drive I fight back the wandering thoughts going to the worst places of my mind. I audibly tell myself to stop and remind myself of God’s provision in my life. I have a conversation with God and I hear Him remind me that He is the Same in good times and bad. Will I praise Him in the good times but renounce Him in the bad? He loves me even when I am hurting, probably even more. The same way I feel more love and compassion flowing from me when my child is hurt by something that I want to protect them from, but that they will learn and grow from. I am reminded not to worry just as the lilies of the field do not worry and the sparrows do not worry; yet God provides for their needs. Am I not more important than they? Then I remember countries where people do not have enough food to get through a day. I remember people who just lost their loved ones to lunatic shootings in malls and churches and how December will be a painful month for them forever. I feel blessed. I pray for them. I feel peace surround me. Then I feel it leave again as I approach the building.

I drive up to the building – Oncology and Hematology Associates. I focus on that part of the sign and not Comprehensive Cancer Center of Central Illinois. For some strange reason, I can tolerate the word oncology, unlike cancer and tumor.

I come in after Brian. No sense in spending an hour there before the actual appointment. I wait in the first waiting pod outside the laboratory. I hate this part. Brian walks behind the curtain to get poked. I hope they find a vein. Maybe Monday was a fluke. I look over at the complimentary coffee. Next to it – mind-numbing brochures about drugs that are supposed to help with the side effects of chemo, pamphlets about hair loss and wigs, booklets about losing a breast and cosmetic surgery, medical journal articles about new treatments. Yeah, free coffee really helps ease that pain. I look away from the constant reminders and articles in front of me instead at a picture on the wall and next to it a placard in memory of Jane Doe. Another picture, then more placards stating in memory of John, Joe, and Jack Doe. I think of all the people who have sat here like me waiting for the love of their lives, the father or mother of their children, their brothers, sisters, parents, whomever, come out from behind that curtain where you are known by name and where the process of the day begins. There is no escaping sickness and death in this place and is it so wrong of me to resent free coffee trying to disguise this fact? Let’s see if anyone tries to make idle conversation with me today. I don’t wish to befriend anyone here. What is wrong with me? I don’t want to talk to some person about their side effects and surgeries as the patient or their experiences as caregiver to their loved one. I don’t want to know, and I don’t know why. Will I get the usual...

Stranger: “You look too young to be in here, sweetie?”
Me: (NO KIDDING! I AM TOO YOUNG! HOW DO YOU THINK WE FELT 10 YEARS AGO AT OUR FIRST VISIT IN OUR MID 20’S! OH YEAH, AND MY KIDS ARE TOO YOUNG TO WATCH THEIR DADDY GO THROUGH THIS! WHILE WE’RE AT IT, MEDICAL EXPENSES COST US 20 TIMES WHAT THEY DID 10 YEARS AGO DUE TO CORPORATE COST SHARING WITH EMPLOYEES, WE ARE UNDER-LIFE-INSURED BECAUSE BRIAN HAS BEEN UNINSURABLE SINCE WE GOT MARRIED AND I AM A STAY AT HOME MOM! SHALL I GO ON? LEAVE ME ALONE SO I WON’T CRY IN FRONT OF MY HUSBAND, PLEASE! ) Oops, make mouth move: “Oh, yeah, cancer doesn’t discriminate on age, it seems. We will keep fighting, though. It is our lot in life. What brings you here?”
Stranger: “Oh, Sweetie, you’re husband is lucky to have you. You are so strong. How do you do it?”
Me: (I fake it half the time. I am scared out of my mind on the inside.) Wait, speak: “We have a lot of faith.” (Also true)

Brian comes out. Move on to next waiting area. Ascend staircase knowing it is getting closer. Teeth start to chatter. Make nervous idle chit chat with Brian. Or just hold hands and look into space. Try not to notice additional placards on the wall, each one memorialized to someone. This place is like London; the whole place is a memorial. Notice large puzzles on the tables and fish tanks scattered throughout. All meant to have something to do to pass the time, to ease the fact that you are probably going to be here for a while. Why am I so ungrateful that someone is trying to make me comfortable? I do not want to be here.

Brian gets called back. Weigh in. Blood pressure. Temperature. Go to the next waiting area – examining room. Teeth chatter harder. Trying to hold it together. Trying to control my mind and the countless scenarios it has laid out. Hold onto the moment of just being alone with Brian. In comes the doctor. No beating around the bush. He knows why we’re here and that we want the news right away. What is the news?

The results: This time MRI looks pretty good. There is increased enhancement around the surgical cavity again. Probably residual tumor, just like last time, but could also be scar tissue or radiation effect. Spectroscopy doesn’t show any abnormality to make them think anything significant is going on. This is decent enough news considering Brian has one of the most aggressive forms of cancer known. CBC on the blood looks all within normal range. The lab techs taking the blood at this place had NO problem finding a vein. We'll chalk it up to a fluke on Monday.

The plan: another round of Temodar for the next 5 days. I would like to give Brian a couple day break, but he wants to get it started right away so he is done by Christmas. Also, he wants to hit it hard early after diagnosis, he tells me, and spread it out later. This round, though, Brian felt a lot more fatigue than usual and is having some pain in his shoulder. He fell during one of our ice storms recently and if the pain continues, he will need an MRI of the shoulder to see if any muscles or ligaments were affected. It is getting better he tells us and he is feeling overall stronger than he was even a week ago. That is why I hate that he has to take chemo again right away.

Summary: All in all, this is good news. Barring any contradiction from Stanford when we hear from them, it should be a pretty Merry Christmas, and the honeymoon begins again until 6-8 weeks from now when we anticipate the next Test and Results Week.

Leaving today, the jingle jangling Santa roaming the halls passing out candy canes is tolerable. I suddenly hanker for a free cup of coffee, and doing a puzzle when I get home doesn’t sound half bad. I tell myself I should note one of those names on the placards and pray for that family. I can’t help but wonder if any of that would be the case if the news were different. It doesn’t matter. The news isn’t different and I get to go home and spend the afternoon with my kids without trying to hold back tears. Praise God!

KEEP BELIEVING